'I lost my health but found me'
Living with an invisible illness
I have the inflammatory autoimmune condition known as Sjogrens syndrome (SS), a condition I share with Venus Williams.
SS is where the body's immune system attacks its lubricating glands, particularly targeting the eyes and mouth.
The main symptoms of SS are chronic fatigue syndrome (CFS), constant achy pain, flu-like symptoms, dry eye due to lack of eye lubrication, and a dry mouth, with resultant severe dental decay as mouth acids erode the teeth.
As my teeth become more fragile and my mouth more painful, I have found it difficult to eat fibrous meat, hard raw vegetables, nuts or dry doughy food such as bread.
I constantly drink water and have ongoing appointments for dental repair work.
SS can also affect other parts of the body and organs.
Having SS and CFS is painful and extremely exhausting.
I also have fibromyalgia, a type of inflammatory arthritis which targets the joints, Reynauds syndrome, which causes thermostat malfunction, and the blood and bone marrow anomaly known as Myelodysplastic Syndrome (MDS). MDS is often a precursor to bone marrow and blood cancers.
Despite these conditions and suffering from perpetual extreme fatigue and a plethora of symptoms, I look healthy and robust.
My doctor says I am quite healthy for a sick person, something we attribute to my former physical fitness and a good diet full of vegetables and quality proteins.
CFS is not just feeling a tiredness that can be restored by sleep or rest, but a debilitating, deeply wearying, constant total exhaustion which sleep does not resolve.
Some days I find it difficult to even breathe. Sitting for any length of time in an armless straight backed chair at the dining table is almost impossible, I have to slump forward or put my elbows on the table to keep upright.
Being unable to stand upright in one position for any length makes queuing almost impossible. I find washing my hair an ordeal and exhausting. Four years on I am unable to do a grocery shop - it is just too exhausting and as my balance and spatial awareness have been affected.
I am 'wobbly'. This wobbliness makes using stairs, crossing the road or traversing narrow access ways an issue. I have had many falls and faints. Walking between two objects in a confined space is fraught and I often bump into things. Due to the MDS I bruise easily, so I am always covered in bruises.
One of the most difficult aspects of CFS is that we do not 'present' as unwell, unless you look into our eyes and see the pain and weariness there.
It took many fruitless visits to the doctor and specialists before arriving at my SS and CFS diagnosis. This was only after I personally raised the possibility of SS as an explanation and contributor to my CFS.
I am now very aware of the importance of being an active engaged patient and of ensuring I am listened to and my symptoms not discounted.
My health journey has been a lonely, often solitary and isolating experience, initially it was an exceedingly lonely place to be. I had returned ill after several years working in Dubai, I was too ill to work (I tried but ended up in hospital twice) and was new to the area -not a good combination for networking plus I was so exhausted and chronically fatigued.
My former friends found the changed me difficult to deal with and drifted away. Sadly, I now know this is a common experience for ill people. One of the most difficult and distressing experiences is watching family and especially friends disappear as the 'old you' becomes 'the new you'.
CFS and SS has robbed me of my career, my financial security, a large active social life, the ability to shop (a tragedy for this former high speed shopper), the ability to travel, the ability to drive for any length of time and the stamina to socialise.
Heartbreakingly, SS has robbed me of my beautiful teeth which I had cherished and looked after all my life. I modelled in my earlier years and how I presented was important to me - something else lost and to grieve for.
Because of CFS I am now unable to do most household chores. Vacuuming is too painful, leaving me breathless and utterly exhausted. I have been forced to engage a house cleaner and for some one on an invalid's benefit this is huge expense.
As someone who swam a kilometre a day for most of her adult life, the loss of physical fitness and resulting deconditioning, the constant extreme exhaustion and pain has been hard to come to terms with.
However, many positives have come from the negatives. I always wanted to live by the beach and write and now I live near the beach in Waikanae and I write. I now have a lovely circle of supportive and loving friends, most similarly afflicted, with whom I am able to be my true authentic self.
I have an active but well-spaced out social life. I have a stable and unstintingly supportive domestic life.
I believe that one of the most important components in our healthcare arsenal is support, and so I have actively sought support groups and social activities that do not require much physical energy.
A source of support and helpful information has been the Kapiti Support Group of WellMe (formerly known as ME/CS Wellington) which meets at the local café, Waimea, on the third Wednesday of every month.
The friendships made there have been very sustaining. Even though I feel unwell all the time, I feel at peace with my life and my lot, and have my ill health to thank for that.
I lost my health but found me. I lost my old life and found a new life, a better life.
If I have anything to say to others with CFS or any other serious debilitating illness, especially those at the start of their journey it is this - your CFS physical symptoms are scientifically validated. Yes, it is emotionally and physically overwhelming initially, and while you may never get return to your former self or be 'the old you' you can come to peace with the 'new you', the 'new normal' and there will be good days with diamond moments.
It has taken me four years of some rather bruising personal and medical journeys to find my peace and regain my emotional strength and I wish that peace and strength for other CFS suffers.
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